new to this .. pardon my rambling its all a bit much

Booberri

Well here goes.. my venture into online message boards. please overlook any miss spelled words

I may just be typing this to make myself feel better I dunno. but here goes.. for starters.. I'm only 36..

April 26, 2007 went to the emergency room with chest pain that turned out to be pluracy .. so a round of antibiotics and im set. but, they did a cat scan to rule out a blood clot in my lungs and found a lump in my right breast
April 27th went to my regular dr and he said it would probably be fibro adenoma and not to worry.. sent me for a mamogram and ultrasound
May 1st had mamogram - the technologist said probably fibro adenoma and not to worry
then had the ultrasound and the lady said 'it doesn't appear to have ALL the characteristics of cancer' then said 'that cat scan probably saved your life' (WHAT! that was my first minor freak out ... some people should just not talk I think!)

May 2nd my regular DR called me AT WORK and said I had to have immediate surgery (immediate.. they throw around words like that immediate to me means NOW .. immediate to my dr meant withing a few weeks hehe this was my first MAJOR melt down and at work none the less!)

May 7th met with the surgeon he also said I had to have surgery 'as soon as possible'. He said they didn't want to use up valuable time doing a biopsy.. he said there was no choice it had to come out

Then I had the pre op tests and x-rays and my surgery was scheduled for May 16th.

The surgery went fine. Not too much pain. They did a 'partial mastectomy'. I'm not sure why they call it that and not a lumpectomy.. I guess it has to do with how much they take out but WHATEVER!

One might think at this point I would be a little worried but I guess I was unwilling to face what was really going on because I really believed they were going to tell me it was nothing to worry about and a fibro adenoma after all.

Monday May 21st went for a follow up with the surgeon and to see if they had my test results. I went by myself. I have no family here and hate relying on my friends to go with me to DR apts like I'm a silly kid
The first thing the surgeon said was 'I noticed you came alone' and I said.. well this is not going to be good news is it.

So finally I have to admit I have cancer. Which is disapointing to say the least! He said it is an agressive type and he was very glad I had that surgery to remove the mass and surrounding tissue. This day he started using the words 'tumor' and 'cancer' they never used those words before.

The next step for me is for them to do surgery this coming Tuesday ane remove some lymph nodes and test those.. if the test is bad they will remove all the lymph nodes on that side. if it is good then they got all the cancer from the previous surgery.
at least that is what the surgeon says

so ever the optimist I'm sure there will be no cancer in my lymph nodes! (Yes I am the Queen of De Nile!)

anyway.. now that I have to admit I have cancer then I have to start asking questions like..

How do I know if they got it all?
How do I know if there is cancer somewhere else and should they be checking?
And if they should be checking.. how exactly do they do that!
but I'm not going to let the paranoia get to me! One day and one step at a time I guess.

The real crazy thing is this lump was found on a complete fluke cat scan! I have never in my life had any kind of chest pain or sickness or anything. I think someone was watching over me and gave me a pain in such a way that they found this cancer. If they hadn't I wouldn't have found the lump on my own and since I'm not 40 I would not have had a mamogram for quite a while.. it might have been too late.

heheh funny how things go..

anyway thanks for letting me ramble here

LesleyH

First of all, congratulations on your excellent care. It looks as though you are in good hands. Your age is a big factor in this. Young women tend to get more aggressive cancers and so you will almost definitely have chemo. The tumor is carefully tested in the lab. They check the margins to make sure they got it all. No need to worry about that. They will initially check the sentinal node - they first one where lymph goes to. If that is negative - no more will need to be removed. If it is positive, they will take more. You will then have chemo and radiation. Normally, if you do not have lymph node involvement there is no need for chemo, but when you are so young, it is usual. You will usually have a number of CT scans before you start chemo. These are just to rule out that the possibility that the cancer has spread. Don't let these get you down. They are routine and almost always negative. I know you can't help worrying because you have so many unknowns right now. Please write to me if you have any questions. I have been through the whole 9 yards! Thinking of you.

Hugs.

Lesley

prayerangel

LesleyH said:

First of all, congratulations on your excellent care. It looks as though you are in good hands. Your age is a big factor in this. Young women tend to get more aggressive cancers and so you will almost definitely have chemo. The tumor is carefully tested in the lab. They check the margins to make sure they got it all. No need to worry about that. They will initially check the sentinal node - they first one where lymph goes to. If that is negative - no more will need to be removed. If it is positive, they will take more. You will then have chemo and radiation. Normally, if you do not have lymph node involvement there is no need for chemo, but when you are so young, it is usual. You will usually have a number of CT scans before you start chemo. These are just to rule out that the possibility that the cancer has spread. Don't let these get you down. They are routine and almost always negative. I know you can't help worrying because you have so many unknowns right now. Please write to me if you have any questions. I have been through the whole 9 yards! Thinking of you.

Hugs.

Lesley

Yes, I agree, you have doctors that are on top of it all. There is a book written by Dr. Susan Love, that is considered to be the breast cancer bible. It is a flat $20.00. You can get used ones on Amazon. Educate yourself, so you can make decisions with your doctors, and know what they're talking about. When the nurse brings you in, ask her, not the dr., for copies of all your tests and x-rays, etc. The book teaches you how to read them all. Read, read, go online, and really know what's going on with your body, and what's coming next. It's much scarier not knowing. I never bring anyone with me to my appts. It IS good to write everything down though, because it's very easy to forget some of the stuff they tell you. I kept a log/journal too. The chemo affected my brain for about 18 mos., and if I didn't have that journal, I would've forgotten some of the kind things people had done for me along the way.
Best of luck to you. Please keep us posted, and you can always ask us questions too.
Karen

msphil

First I want to say God Bless yoy and then your docs are on top of things which is very good, then I too had chemo, radiation and I had a total mastectomy while preparing for my wedding at age 42. I suggest U get support from family and friends and lots of prayer, trust me I could not have gotten through without my Lord and Saviour Jesus Christ. You definitely need a higher power. Come back and ask us anything we are here for U. msphil

Susan956

Hello Booberri,

Please feel free to ramble all you want. I always found that putting it on paper let me dump some of my fear and frustration. I found that when I was at your stage getting all of the information that I could helped. Know that there are many of us here who have done the whole treatment gig and we are still here.... Some of us for many years and others of us who are either still in treatment or else a year or two out. The main thing to remember is that breast cancer is treatable and you will get your life back... My Onc convinced me to look at Breast Cancer treatments as a time that I would have to slow down and prepare for the rest of my healthy life.

So take care... and God Bless....

and come and join us as often as you wish.

Susan

KathiM

My breast cancer was found on a PET scan that was testing for metastisis from my colon cancer. A 10-year-old lump "lit up"....sigh....

Lesley described it so well, I don't know if there is anything to add...lol!

Welcome to the family, by the way....we are here for each other whatever happens!

As far as if it has spread, the lymph nodes will tell the tale. If there is involvement, well, congrats...you win the chemo prize....Mine were, I did...

Take each day one at a time. PLEASE take someone with you FROM NOW ON!!!!! We survivors only hear about half of everything...and no, you are NOT being a baby!!!!

Hugs, Kathi

Booberri

Hey everyone!
Thanks so much for all the replies. I'm going to go out tomorrow and buy that book and a journal.. I really think that is a great idea. I don't want to forget what this is like.

the thought of chemo scares the heck out of me.. so far they have been just saying radiation but the way this all has been going (from bad to worse) i really have no idea what to expect. I kinda had it in my mind that I dodged the chemo bullet but maybe I haven't. I guess the only thing to do is wait and see!

Its a great thing I have lots of friends. I think they are all more worried about me that I am. My family is all very far away so thats a little tough.
I had to go to my regular DR today for more pre op blood tests.. the same ones I had done a week and a half ago.. but I think these people get off on sticking me with needles or something so I got to do them again OIY!

I have always been a person who jokes a lot. So I have been making lots of jokes and my friends look at me like I'm crazy.
They say 'how can you make jokes' and I say 'how can I not!' hehehehe

anyway thanks so much for all the replies. I'm hanging in there!

HUGS to all!!!

cabbott

Booberri said:

Hey everyone!
Thanks so much for all the replies. I'm going to go out tomorrow and buy that book and a journal.. I really think that is a great idea. I don't want to forget what this is like.

the thought of chemo scares the heck out of me.. so far they have been just saying radiation but the way this all has been going (from bad to worse) i really have no idea what to expect. I kinda had it in my mind that I dodged the chemo bullet but maybe I haven't. I guess the only thing to do is wait and see!

Its a great thing I have lots of friends. I think they are all more worried about me that I am. My family is all very far away so thats a little tough.
I had to go to my regular DR today for more pre op blood tests.. the same ones I had done a week and a half ago.. but I think these people get off on sticking me with needles or something so I got to do them again OIY!

I have always been a person who jokes a lot. So I have been making lots of jokes and my friends look at me like I'm crazy.
They say 'how can you make jokes' and I say 'how can I not!' hehehehe

anyway thanks so much for all the replies. I'm hanging in there!

HUGS to all!!!

While you are out buying that book, see if you can pick up a small tape recorder, esp. if you go in alone. I still go back and listen to those first few meetings with the oncologist and surgeon to make sure I didn't miss anything. That is when they spent the most time answering my questions and telling me stuff. The book was my major resource of information. It is best not to read too much at one time. Find the chapter you are on and digest that much. Time will tell if you need to read more.

I turned out to have a small cancer in two spots that required a mastectomy but no chemo, just hormone treatment. They considered me young in my mid-forties, but I had one good friend that was in her twenties when she was diagnosed. She had less than two days from diagnosis to mastectomy. She had chemo the first time around and more chemo and radiation when a node turned positive two years later. Now it has been over twenty years and she is still going strong. She is a strong believer in following doctor recomendations and getting aggressive with this nasty disease. Chemo drugs and the medicines they use to treat side effects have gotten so much better than even 10 years ago that you should just plain not read anything from back in the 90's. It is totally outdated. Yes, many kinds of chemo still make hair fall out, but lots of the stomach problems can be controlled now. A co-worker of mine missed all of two days all year while undergoing chemo and radiation for an aggressive cancer. She is doing fine over 7 years later. They are inventing new and better forms of treatment for cancer all the time. So don't ever lose your sense of humor or hope. Oh, and one more thing: if you have a cheap three hole notebook and keep copies of your blood tests and other reports, you will be able to pop up the latest report to your over-worked doctors and maybe save yourself a needle stick or two. Sometimes they have to repeat a test or do a different one, but sometimes they don't. It helps me to remember what I've done just to keep the reports in chronological order. And I don't mind saving myself a needle stick or two when I can! Good luck!

KathiM

Booberri said:

Hey everyone!
Thanks so much for all the replies. I'm going to go out tomorrow and buy that book and a journal.. I really think that is a great idea. I don't want to forget what this is like.

the thought of chemo scares the heck out of me.. so far they have been just saying radiation but the way this all has been going (from bad to worse) i really have no idea what to expect. I kinda had it in my mind that I dodged the chemo bullet but maybe I haven't. I guess the only thing to do is wait and see!

Its a great thing I have lots of friends. I think they are all more worried about me that I am. My family is all very far away so thats a little tough.
I had to go to my regular DR today for more pre op blood tests.. the same ones I had done a week and a half ago.. but I think these people get off on sticking me with needles or something so I got to do them again OIY!

I have always been a person who jokes a lot. So I have been making lots of jokes and my friends look at me like I'm crazy.
They say 'how can you make jokes' and I say 'how can I not!' hehehehe

anyway thanks so much for all the replies. I'm hanging in there!

HUGS to all!!!

Laughter is being seriously considered part of every survivor's treatment plan. I found something every day to laugh about...made the cancer beast so mad!!!!

You have a better chance of beating this stuff if you have a winner attitude...tell your friends this is just a bump in the road...don't go counting you down!!!!

There are so MANY pink ribbon wearers...we get to flaunt our stuff often...

I have a book, out of my journaling..."It's hard to say No to a bald lady"....I had 2 fights...back to back...colorectal followed 6 months later by breast...and I am cancer free now!!! (The docs told me I had 6 months to live, 2 YEARS and 6 months ago....lol!)

Hugs, kathi

Unknown

Hi Booberri,
There are lots of us out there who have been through what you are facing and now call ourselves survivors. While it isn't a fun time, it was a time when I learned how many real friends I had who loved and cared for me. That was inspirational in itself! Chemo is different for everyone, so I won't tell you how mine went, except that it was much easier than the old horror stories I had heard. I looked at it as getting the flu for a few days on a scheduled basis. I knew it wouldn't last long. The good news is that though my cancer was aggressive, and had invaded the lymph nodes through good doctors and agressive treatments, six years out I am cancer free and healthy. Allow yourself to rely on your friends whenever you need to. Take them with you to doctor's meetings to help you remember everything that is said. Journal, journal, journal - you will reread those entries later and admire your own courage. - mj

seof

I am new to this, personally, but my Sister showed me the way. She was diagnosed at the age of 39 with breast cancer, had a mastectomy/reconstruction, radiation, chemo, remission, reappearance on the other breast...start all over again with chemo/radiation. It metastasized, spread to liver, lungs, brain, stomach...who knows where else. She was able to be involved in several studies, so got the cutting edge of treatment and lived 5 years longer than predicted. She maintained a positive attitude and good humor throughout. Her favorite saying was, "I have cancer but I am not sick". When she lost her hip-length blonde hair she donated it to "locks of love" (makes wigs for kids with cancer) and called herself "Mrs. Clean". She left her husband and 4 kids and went to live cancer-free with Jesus in heaven in 2003 at the age of 45. I am newly diagnosed at the age of 43. I am afraid of leaving my husband and daughters, and I do not like putting my Mom and my other sister through this all over again, but I intend to honor her memory by remaining as defiantly positive as possible. A good laugh at least once a day is a big help in that regard. I am also grateful to be part of a very supportive family and church community. Seek help wherever you can find what works for you...be sure to let people know specifically what they can do to help. Reluctance often comes from fear and uncertainty, not from lack of desire or intention to help. Thanks for sharing your experience.

Blessedgrandma

LesleyH said:

First of all, congratulations on your excellent care. It looks as though you are in good hands. Your age is a big factor in this. Young women tend to get more aggressive cancers and so you will almost definitely have chemo. The tumor is carefully tested in the lab. They check the margins to make sure they got it all. No need to worry about that. They will initially check the sentinal node - they first one where lymph goes to. If that is negative - no more will need to be removed. If it is positive, they will take more. You will then have chemo and radiation. Normally, if you do not have lymph node involvement there is no need for chemo, but when you are so young, it is usual. You will usually have a number of CT scans before you start chemo. These are just to rule out that the possibility that the cancer has spread. Don't let these get you down. They are routine and almost always negative. I know you can't help worrying because you have so many unknowns right now. Please write to me if you have any questions. I have been through the whole 9 yards! Thinking of you.

Hugs.

Lesley

I have just been diagnosed with bc. A large lump in a matter of three or four months. I have had a mammo, ultra sound and biopsy. Hormone receptor negative and neg neu..whatever that means. Dr. said I need chemo, surgery and radiation. PET scan is very wierd. Says I have positive cancer in lymph node, lump in breast and subcutaneous (skin). BUT the PET scan says large mass consistent with "no" cancer. Even the doctors that read it to me over the phone were confused and thought it must be a typo by the radiologist. I have the report now and it is the weekend and I am so upset..really don't know what is going on. ONLY uptakes (spots that lit up on PET were the breast lump, skin over breast and the one lymph node. Ever hear of this? ANy advise?